| Author |
Message |
Bin.Yousef
Member
Username: Gulfjoinery
Post Number: 10
Registered: 08-2013
| | Posted on Saturday, November 16, 2013 - 05:52 pm: | 
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Hello everyone
I need the help I'm searching over the net for the new medcine that I could help my father since now we are having very hard time to find a center to accept him for the lung transplant also his age dose not support do still researching about this matter
Right now at the same time well we are searching for any center that will accept him we also searching for any treatment such medicine etc
When we are searching the net we found
Pirfenidone
this is not available in our country uae so we have make un order from india and it will be arrive by next week and I will be going to doctor so my question have any one try it ???
KALYDECO™ (ivacaftor)
This is just now I found it in google and I'm not sure how dose it work could any one tell me more
And what other treatment we could help my father is there any other medcine ?
Thank you |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17932
Registered: 05-2003
| | Posted on Sunday, November 17, 2013 - 03:33 pm: |
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Hi Yousef Bin
Your Father is very blessed to have you help him.
I am wondering why you chose Kalydeco? This drug is new and it is used to treat Cystic Fibrosis which is a genetic lung/pancreas condition. This drugs is very expensive and is only given to CF patients with a specific gene mutation.
Maybe there are other diseases that will benefit but I a big believer that the wrong drug can make someone very ill.
You mentioned taking http://en.wikipedia.org/wiki/Pirfenidone
which sounds like it is used for the treatment of Pulmonary Fibrosis.
Please repost your questions in our Heart and lung forum. Some members subscribe to our forum and many might not see your post here.
Keep your Father moving and eating healthy foods.
Does the Cleveland Clinic preform double lung transplants?
http://www.clevelandclinicabudhabi.ae/en/pages/default.aspx
Many of us that surf the internet will be reading your post for the first time. Please be specific in each post in order to receive more replies.
Consider adding a signature to your profile. Go to Edit Profile and type in your username and password. Scroll down to the signature area, type in what you would like for us to know about you and your Father and click save. Your message will duplicate itself each time you post a message.
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17933
Registered: 05-2003
| | Posted on Sunday, November 17, 2013 - 03:41 pm: |
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Regarding nutrition
Does your father eat healthy foods? He might benefit going on a gluten free diet which helps reduce inflammation.
A few of us here take Krill oil and I like cod liver oil.
I frequently get a dry cough due to Sinus congestion and Cod Liver oil really helps to stop my cough and heal my throat. Cod Liver oil is high in vitamin A and D and I take several teaspoons daily.
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Bin.Yousef
Member
Username: Gulfjoinery
Post Number: 11
Registered: 08-2013
| | Posted on Tuesday, November 19, 2013 - 09:19 pm: |
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At the moment he admission at hospital so I think they are giving him diet food
His oxsgen start to get quick low as soon as he lil moving so I'm very worry about him
Looking for advice to keep my father healthy (Idiopathic advanced bil pulmonary fibrosis)
•still searching for center to accept my father condition
•searching for list of the best food to keep him healthy
•looking for the best treatment as of today |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17935
Registered: 05-2003
| | Posted on Friday, November 22, 2013 - 01:02 pm: |
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Hi
Thank you for filling out your profile.
Do you feel comfortable with the care that your Father is receiving?
If so, perhaps his doctors can help you find a transplant center?
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Bin.Yousef
Member
Username: Gulfjoinery
Post Number: 12
Registered: 08-2013
| | Posted on Friday, November 22, 2013 - 09:22 pm: |
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I try to ask them with regarding lung transplant but they don't no any center so
Looking for advice to keep my father healthy (Idiopathic advanced bil pulmonary fibrosis)
•still searching for center to accept my father condition
•searching for list of the best food to keep him healthy
•looking for the best treatment as of today |
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Hostess Risé
Board Administrator
Username: Rise
Post Number: 17938
Registered: 05-2003
| | Posted on Saturday, November 23, 2013 - 03:36 pm: |
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I am sorry to hear this news.
How is the new medication working?
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